Avoiding unplanned admissions in neuromuscular patients: A regional audit of hospital admissions 2009-11

1. The MRC Centre for Neuromuscular Diseases, UCL Institute of Neurology, Queen Square 2. Department of Molecular Neuroscience, UCL Insitute of Neurology, Queen Square 3. The Dubowitz Neuromuscular Centre, UCL Institute of Child Health 4. Great Ormond Street Hospital, London 5. Whipps Cross Universty Hospital NHS Trust 6. Barts Health NHS Trust 7. Brighton & Susex University Hospitals NHS Trust 8. Cambridge University Hospitals NHS Foundation Trust 9. Guys & St Thomas NHS Foundation Trust 10. Homerton University Hospital NHS Foundation Trust 11. Imperial College Healthcare NHS Trust 12. Kings College Hospital NHS Foundation Trust 12. The North West London Hospitals NHS Trust 14. Oxford University Hospitals NHS Trust 15. Royal Free London NHS Foundation Trust 16. University Hospital Southampton NHS Foundation Trust

Fatima Jaffer1,2, Mary M Reilly1, Ros Quinlivan1,3,4, Francesco Muntoni3,4, Michael Lunn1, Hadi Manji1, Christopher Turner1, Matthew Parton1,5, Stephanie Robb3,4, Aleksandar Radunovic6, Romi Saha7, Charlotte Brierley8, Elizabeth Wraige9, Paul Jarman10, Wojtek Rakowicz11, Fiona Norwood12, Michael Rose12, Catherine Mummery13, David Hilton-Jones14, Lionel Ginsberg15, Richard Orrell15, Tony Schapira15, Simon Hammans16, Michael G Hanna1,2

Background
Unplanned or emergency admissions are those hospital admissions that cannot be predicted and occur at short notice because of perceived clinical need (NHS Connecting for
Health 2010). In 2007-2008 there were 4.75 million emergency admissions across all specialties, and these admissions account for 65% of hospital bed days in England and therefore, is a significant financial burden to the NHS (Hospital Episodes Statistics data). In the UK there are 70,000 people with neuromuscular disorders. These are multisystem inherited or acquired disorders requiring long-term multi-disciplinary care and surveillance for progression of disease and/or complications. NHS data shows that the estimated number of unplanned admissions is 28208 per year for patients with a neuromuscular disorder. The average number of admissions estimated at 0.3949 per patient and the average cost of an unplanned hospital admission is 2890.18. The total cost is 81,000 for 28208 admissions (Muscular Dystrophy campaign). Data presented to The All Party Parliamentary Group (APPG) for Muscular Dystrophy showed significant variation in multi-disciplinary service provision across the UK & estimated high rates of unplanned admissions in patients with neuromuscular disorders. An audit was commissioned to establish the scale of the problem (Walton Report 2009).

Aims of audit
1. Identify unplanned admissions in neuromuscular patients across four Specialised Commissioning Regions (SCGs): London, East of England, South-Central & SouthEast Coast 2. Determine the proportion of preventable admissions 3. Identify the characteristics of unplanned admissions to determine causes and areas for improvement through service provision 4. Determine the proportion of patients known to a neuromuscular service

Methods
A retrospective case-note analysis Unplanned admissions were identified using centrally generated data (secondary user services) at each SCG between 1st January 2009 to 30th June 2011 ICD-10 codes were used to identify patients with neuromuscular and metabolic diseases 12 trusts across the 4 SCGs accepted the invitation to be audited Expert Consensus Group devised criteria for a preventable admission. These included whether the admission was related to: - Known potentially preventable complication of neuromuscular disease and/or complications of immunosuppression - Evidence of failure to follow an emergency plan - Previous contact with healthcare profession (week prior to admission) - Repeated attendance to A&E - Failed discharge from recent hospital admission - Re-admission with an existing or new avoidable problem Exclusions: incomplete notes, incorrect coding and non-neuromuscular diagnosis

Results (presented to All Party Parliamentary Group for Muscular Dystrophy 2012)
There were 576 admissions for 395 individual patients
Trust Barking, Havering and Redbridge University Hospitals NHS Trust Barts Health NHS Trust Brighton and Sussex University Hospitals NHS Trust Great Ormond Street Hospital for Children NHS Foundation Trust* Guys and St Thomas NHS Foundation Trust* Homerton University Hospital NHS Foundation Trust Imperial College Healthcare NHS Trust* The North West London Hospitals NHS Trust Charing Cross Hammersmith Central Middlesex Northwick Park John Radcliffe Evelina Childrens Hospital King George Queens Royal London* Whipps Cross Number of admissions 2 30 22 28 66 7 6 16 36 10 1 57 103 45 37 110 576

Oxford University Hospitals NHS Trust* Royal Free London NHS Foundation Trust* University College London Hospitals NHS Foundation Trust (including NHNN)* University Hospital Southampton NHS Foundation Trust* Total admissions

Fig1. Participating trusts & no. of admissions

Admission preventable All admissions (%) Neuromuscular related admissions (%)

Fig 2. No. of patients with established diagnosis & correlating no. & percentage of admissions

Fig 3. No. of patients with pre-existing neuromuscular (NM) disorder & proportions known to a specialist NM service

Conclusions
37.5% of all unplanned admissions are avoidable 63% of unplanned admissions were avoidable in patients with a pre-existing neuromuscular disorder Main interventions which can prevent such admissions include: - Implementation of an emergency plan - Ongoing surveillance of neuromuscular disorder - Access to specialist neuromuscular service - Access to & provision of specialist equipment Recommendations See document attached to poster

Yes Possibly No Could not be determined

216 (37.5) 28 (4.9) 327 (56.8) 5 (0.9)

143 (63.0) 13 (5.7) 67 (29.5) 4 (1.8)

Total

576

227

Fig 4. No. & percentage of preventable admissions Vs unavoidable & proportions related to underlying NM disease

Fig 5. Measures which could have prevented admissions

Fig 6. Other results: Emergency plans & follow up provision